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Tzedakah or tikkun olam, how about just being kind to families with special needs

Blogger

Elise Ronan
#RenegadeJew ...Elise's specific background deals with the practical aspects of raising special needs children. She has over 20 years experience
… [More]advocating for her sons and others. Her motto: Don't put off the important things. Stand up for what you believe in. Do what is right and honest. Have patience. Have self-respect. Be kind. And above all BE BRAVE.
Elise is a graduate of Boston University Law School and a Certified College Transition Coach for Persons with Asperger's Syndrome. She blogs under a pen-name to protect her sons' privacy. [Less]

One of the most important aspects of Judaism is our belief in charity, tzedakah. No I am not going to say “Tikkun Olam,” simply because there has been a controversy of late as to what those words actually mean. Growing up I was taught that tikkun olam refers to making the world a better place with acts of random and general kindness. Meanwhile some Torah scholars have written that it actually has more to do with following G-d’s commandments and mitzvote than the modern universalized ideal of “repairing the world.”

So for arguments sake, and this column, I am simply going to address the basic reality that at some time in our lives we all need that helping hand of human kindness. I am also not going to discuss whether Torah, Talmud or any Jewish book of laws prescribes when is it appropriate to be kind or giving, how that act is to be accomplished and whether we give anonymously or not. I am simply going to explain to you how you could support a family when they are dealing with a person with a special need. How families with fragile members experience the world under certain circumstances and how individuals can help.

The first thing society needs to understand is how these families feel. In my own experience, I would say that the overwhelming experience is one of isolation and separation. You end up being separated from the world at large, mostly because you end up at times not being able to go out into the world at large. Whether you are dealing with a physically ill child with a life threatening illness or a child with a physical disability or a child with a developmental disability, society is not always an accepting place for those that are different. Oh society today makes “accommodations” for those with physical needs, but it’s the human attitude found in society that needs more work.

When I began my journey over twenty years ago, there was no place to go if you had a child that could not handle the sensory overload of society. There were no accommodating movie theaters, play places or playgrounds. There were no real support groups. There was no Internet. You need to understand that when you were alone with a child with special needs, you were truly, utterly and absolutely all alone.

Isolation from the rest of the world is perhaps the worst of all the realities that families have to contend with. The loss of human contact and friendships completes the picture that you really live on the fringes of society. This aloneness only creates an added stress to that stress that families are already dealing with on a daily basis. No, it is not everyone’s responsibility to help out every family dealing with special needs issues. But if you know such a family would it really interfere with your world if you lived your life with a little compassion once in awhile?

In today’s world if you are looking to do something good and profound for a family that you know is dealing with the issues surrounding special needs here are some things you could do to help:

1.Smile when you see that family coming your way. Don’t turn away. Don’t walk in the other direction (people used to cross the street when they saw my family coming down the block). Spend a few minutes on the sidewalk and say hello. We don’t always only want to talk about special needs issues. We really do like to talk about everything that everyone else likes to talk about too: politics, sports, fashion, novels, and movies, etc.

2.If you see a mother struggling with a child that is melting down don’t just assume that that child is being “bratty.” The child could be having a sensory overload. Offer to help without being condescending. One day when my children were 6 and 3 they were having a hard time in the post office. Instead of offering to help the elderly people in line started verbally abusing my children. Well, yes I did stand up to them, and no I didn’t tell them that the boys were autistic. I had told strangers in public at different times, but instead of an apology for their actions all I got was a lecture about how I shouldn’t be bringing such children out into society if they can’t act properly. I learned those who would attack you in public have no care to apologize; they only want to shame you. In truth, jumping to conclusions about why a child is being inappropriate is not the way to neither handle nor help the situation.Being maligned in public, with the know-it-all attitude abuse, the unmitigated cruelty, by those who are ignorant, is also one of the main reasons families with children with special needs do not go out into public. Also if you don’t want to help then don’t stare, don’t whisper behind the parent’s back and don’t point. It’s all rude. In fact, ruder than an out of control child in public could ever be.

3.Because a child has special needs doesn’t mean it’s the end of your friendship. Offer to come over and spend time with your friend even if you have to stay at their home because she can’t afford a sitter. It is not easy to find childcare for those with special needs and if you do, it can be budget busting. The cost of taking care of a child with special needs can break the bank. You do not use your fungible money for frivolous things like your own need to go out with a friend when your child needs therapies, new technologies, medicines and/or a special diet.Come over and sit with your friend, bring a bottle of wine if you like, or just bring a fancy type of tea. Honestly just bring you. Let them know you are still there for them and are still their friend even though life has a way of changing your relationship.

4.Bring over dinner for the family once in awhile. Between, the requirements of childcare, housekeeping and cooking it can be very stressful for primary care givers of children with special needs. A little helping hand would be appreciated. Simply because a disability is invisible doesn’t mean that it doesn’t take a huge toll on the family. Alleviating one stressful aspect of one day could go along way in giving the primary care giver a little bit of respite.

5.If you make a birthday party for all the children in the class invite the child with special needs. It’s OK to ask if there are any special requirements and tell the parent that it would be fine if they stayed just in case they are needed. (Most parents of children with special needs understand that other children’s birthday parties are not a freebie time for them and that they are needed in these situations to help out.) Do you have any idea what its like when everyone gets invited to every party but your child? Children with special needs do know what is happening in the world around them and if you don’t think alienating them is akin to bullying then you are wrong. You might only be thinking of your child and not wanting to have problems at their party (which is fair), but you are also teaching them to not care about those that are different and to be selfish and self-centered.

6.Teach your children to respect and accept people that are different. You can talk a good game all you want, but it’s your actions that make the most impact. If you tell your child to be nice to the “special child,” but don’t let them into your child’s life your offspring will pick up on that. They will know that the different child is fair game and they don’t have to be nice or respectful to the child with any kind of special need. You are teaching your child that a child with a special need, one who usually has no friends to stand up for them, is a bully-ready-target. And that there will be no repercussions.

Anyway these are just some ideas I have come up with letting families of children with special needs know that they are not pariahs and are welcome into the family of nations. Heck it’s a nice way of letting them know you don’t resent them living in your neighborhood, going to your school, or house of worship, too.

Kindness, teaching it to your child, is an important aspect of developing into a whole human being. It is easy to care in the abstract about people. However, its what you do face-to-face, on a daily basis, when confronted with those in need that really counts.

So what do you think? Is it tzedakah or tikkun olam or both or neither? In truth the family with special needs don’t really care which word you use. What they care about is kindness, being accepted and not feeling so very much alone.

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